New to P.O.T.S. diagnosis and have questions

[hopelovesmercy]

My primary doctor doesn't know a whole lot about POTS and well neither do I but I feel like I have more issues than just POTS! I like him a whole lot but he is not sure what else to do! I feel like I have Dysautonomia because I have trouble regulating my body temperature, horrible migraines, I have recently been put on oxygen even though my lungs look fine! Before my body decided to go nuts I was doing five mile workouts to loose weight and now I can barely get out of bed! I asked them why am I on oxygen and they just said I failed the pulseoximeter test (I think it was called something like that) and that I needed to be on oxygen 24/7! I am having all types of gastrointestinal problems from not being able to eat normally, throwing up sometimes, nauseated all the time, and I go days without doing number two when I used to go 2 or 3 times a day! I have two pretty high power medicines to help me in that area and its help maybe just a little bit but I am still no way close to normal. I am having lots of muscle and joint pain and swelling especially on my left side all the way up to my face even! My cardiologist said they treat POTS just like dysautonomia and she just wants to get my blood pressure up but I feel Dizzy lightheaded even when my pressure is fine! I'm frustrated and I don't know how to advocate for myself and I don't have family to help me through this process! My doctor keeps asking me when I pass out if I wet myself and I haven't. Is that what normally happens if you pass out? I haven't heard others say that happens to them! I am glad I have some answers but I don't know what other tests should be done to find out why my body has decided to go nuts all of the sudden! I was having a few of the problems here and there for the past two years but now I am confined to my apartment for the most part! I don't know if it helps or not but I have a Polycystic Ovarian Syndrome, hypothyroid! I understand that your not doctors but I could use some help from your experience! Sorry about all the drama but its hard being new to this and not having anyone to help me on a everyday basis! I have a few friends but they don't understand and they don't know how to help! I live alone!

[Heiferly]

I don't think an endocrinologist workup would be the first things to look into considering your symptoms.

There is no one condition "dysautonomia," so I'm unsure what your cardiologist means about treating POTS the same as dysautonomia. Different forms of dysautonomia or secondary dysautonomias (e.g., autoimmune autonomic ganglionopathy, pure autonomic failure, Sjogren's disease, mitochondrial disease) have different treatments. Is it possible for you to get a second opinion from a doctor with more knowledge/experience with dysautonomia?

POTS is rarely diagnosed and managed by a general practitioner. Usually an EP cardiologist (electrophysiologist) does the tilt table test and other diagnostics needed. If a more broad testing of the autonomic nervous system is needed, a neurologist may get involved, usually a Neuro-muscular specialist, sometimes one who has specialty in autonomic neurology.

My recommendation would be to pursue further autonomic testing with a more knowledgeable doc.

[LivingInHope]

Welcome to the dysautonomia forum!  I am sorry you are having a very rough time of it.  

What tests have they run so far?  Have you had a complete work up from an endocrinologist, since you have hormonal issues (polycystic and hypothyroidism)?  

Have they done any MRIs of your brain, or dynamically done pituitary MRIs with your symptoms?  The hypothalamus gland in your brain is responsible for temperature regulation and your pituitary gland is not far away.  

Also, have they checked your cervical spine with MRI to see if there is any encroachment or damage there (in regards to your breathing)?  Have they looked to make sure there is no issue with your spine in regards to your gastrointestinal system changes?

  Have they made sure you were not anemic, since you had low oxygen with the pulseoximeter and also since you have dizziness even when your blood pressure is fine and headaches?

What tests has a gastrointestinal specialist run on you, if any?

Have they checked you for autoimmune problems, such as rheumatoid arthritis, etc.?

Do you have an HMO?  If so, see if they have a nurse clinical advisor that can try to assist you to get the help you need.